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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Fiber is Bad For ME/CFS Patients! (?)

What kinds of foods cause you problems?

  • I cannot eat dairy without having problems

    Votes: 8 61.5%
  • Eating fresh fruits and vegetables is not good

    Votes: 2 15.4%
  • Too many cooked vegetables will cause me problems

    Votes: 1 7.7%
  • Eating alot of grains is not good for me.

    Votes: 8 61.5%
  • Meat in general is a bad idea

    Votes: 1 7.7%
  • I have a cast iron stomach, I can eat anything I want - too bad for the rest of you!

    Votes: 2 15.4%

  • Total voters
    13
  • Poll closed .

Tony

Still working on it all..
Messages
363
Location
Melbourne, Australia
Yes, high fructose corn syrup is a popular ingredient in many processed foods.

It isn't necessary to go off fructose completely...that would be very difficult and is only necessary for people with the genetic "fructose intolerance".

The diet for fructose malabsorption is simple and easy to follow. The emphasis is on 'low' fructose, as opposed to no fructose. The test is easier but at $70 here, many find it hard to afford.
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Sometimes, I wonder about our diets

Tony,

I have to admit that after spending nearly $3000 at the Gastroenterologist in early 2004 on tests, spending another $70 doesn't appeal at the moment.

In fact, I cringe at even the smallest suggestion of expenditure to be honest.

But since I know nothing about Fructose malab. I will make it a priority to look up the internet. The many books on health at home didn't reveal anything when I checked over the weekend.

I sometimes think that (with my wonderful local Doctor to bounce ideas off - he was the Staff Physician at The Royal Melbourne Hospital at one time), I am getting better in leaps & bounds through researching & fine tuning my diet myself.

I can't change the stress I experience through working full time, but I can control my diet (since I rarely go out). The rare times I eat out, it's usually with vegetarian, dairy intolerant friends, or family who accept that I will pick & chose what I eat.

Apart from supporting organic farmers (if possible), I suspect that many people (not just CFS/FM) are becoming food sensitive.

You only have to read the long list of additives/preservatives, food colourings, crop chemicals & artificial fertilizers to wonder why there aren't more people chronically ill & fatiqued.

So I believe it's not just about grain digestive issues, it's about where that grain orginates & how it is grown.

When I was studying aromatherapy (& in some respects also when studying herbal medicine), the lecturer stressed the varying degree of potency & percentage of alkaloids (the therapuetic constituent) found in herbs grown on different sides of a hill, different climates, harvesting in morning after dew has lifted but before the volatile oils reduce etc. Even the emotional state of the picker can affect the raw product. Pickers who are stressed or angry might impart extra body oils or perspiration. And while you would always wash raw food, there must be some degree of contamination.

I do better on cooked food these days - easier on the IBS & digestion.

And like some others, I need a bit of red meat (not too much). I try to balance meat, fish, eggs & vegetarian meals.

So I believe, the same raw food product wheat, rye, millet for example, will have considerablely less harmful effect if it is organic, consumed as fresh as possible, with as little modification to the true natural plant structure as possible.

I have read numerous articles & books on the subject of mould & microbes contaminating raw food materials. Some grains or raw foods are also rancid by the time the public get them off the supermarket shelf.

I also recommend buying in small quantities unless you have a big family & consume raw flours & cooking oils etc very quickly.

Many years ago, I worked for a family who owned a flour mill in country Victoria. Whenever someone went up to the Mill, they would bring me freshly ground flour, wheatgerm etc. I would always bake the next day, & you would not believe the delicious, fluffy, baked goods that arose from those freshly milled ingredients. That was back in the days when I still ate grains - the taste & degreee of rising was amazing.

Hence, my current interest in both organic (& also Paleo style of diet ie dairy/grain free).

Despite the high cost of organic products in this country, I believe that if you cut out all processed foods, the savings you make can go towards the higher cost of fresh organic fruit/vegetables.

Or better still, if you have sufficient back yard or know someone close by with arable land, you could try growing your own. My parents in their 80's still grow most of their vegetables themselves in the small back yard of their retirement unit, although I believe now that my Mother can't bend, there is great disatisfaction in the way my Father carries out her gardening instructions! I just hope their local council don't spray surrounding fields near their village with pesticide that might be carried by the wind over their back fence.

I can only afford to buy organic, since I am working full-time & go without other things such as haircuts, clothes & holidays. Am not physically fit or well enough to go any distance for holiday (even if I did have the money).

Victoria
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Interesting links, Tony

Tony,

after a very, very, very brief scan (I am a speed reader, so jumped down to the food listing page on Sue Shepherd's site first - before I start work for the day). I will print the articles after work & take them home to read in full.

Except for Granny Smith apples (which are the only apple I like) & the occasional pear, it would appear that I eat nearly all the right foods these days.

Could be a contributing factor as to why I rarely have IBS symtoms these days. I've gone from 2 1/2 years of chronic daily diarrhea, excruciating bowel pain for up to 4-5 hours every night (I was usually awake from 1.30am to 5.30am every single night - literally - & rarely got to work on time,

to..........

Now I would have about 8-10 episodes in a whole year, and 85% of these I could explain away by the food I had eaten prior to the episode. As I mentioned in a previous post, I am not perfect, I have the occasional binge & then suffer greatly afterwards.

I truly believe I have finally put together the right diet (for me). May not work for everyone with IBS. I have other factors like high cholesterol, high blood sugar (I was classified as pre diabetic), high chronic inflammation to also factor in when I designed my current diet.

Thankyou so much for the links.

I really appreciate it, as I have to do my internet research at/after work and have limited time.

Victoria
 

Tony

Still working on it all..
Messages
363
Location
Melbourne, Australia
You're welcome! The only food not listed in that article and should be is green and yellow beans, the snap variety. Maybe they didn't know about it at the time...
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I used to have terrible stomach and intestional problems, ever since teenager. I no longer any problems or sensitiviteis except dairy. Everything else healed over a period of about 4 years. I eat a high fiber diet with whole grains and fruits galore, my only problem being calorie content. Having fresh produce from the garden and all that good stuff is great at this time of year. I grow and enjoy tremendously Kentucky Wonder Pole green and wax beans.
 

R**

Senior Member
Messages
121
I go back and forth on this. My gut blew out at about 4.5 months on mepron and biaxin with doxy in and out of the mix.

CSA showed no beneficial bacteria. I lost weight rapidly.. 30 pounds very fast. Enterolab showed gluten IgA. Off gluten and abx.. weight loss stopped. Still big problems. Food not digesting, though CSA did not for some reason pick up the extent of that.. nor did it pick up the parasites that came out when I upped my garlic..

Started GAPS diet and worked up as they suggest. Started with bone broths and boiled meat, soft cooked veges and lots of ghee and some coconut oil. (former vegetarian not liking this) I craved teh ghee and coconut oil. They are very healing to the gut. I am not sure if it was GAPS or time.. but last GI panel showed a huge increase in beneficial bacteria. Sig A up.. but lots of gut bacteria.

I have been off GAPS for a while (still gluten free).. you do work up to everything but grains and many beans because of the starch.(which makes me want to cry.. I can actualy deal without the grains except corn tortilla every now and then) No sugar, no lactose.. 24 hour yogurt eventually.

Which brings me back to the possibility that I might need to go back to GAPS.. just not appealing at all. But I have not purposely addressed these specific bacteria.. the Metametrix Panel seems to pick up pathogens that the CSA does not.

The theory behind the elimination of grains I think.. at last according to the GAPS diet and the Specific Carb Diet is the amylose.. add in lactose and sugars except in fruit form and honey. They feed the bacteria in the gut.

Honey and fructose in fruit form supposedly digest very quickly, thus do tno feed the bacteria.

I dont drink milk.. eat yogurt and milk in recipes. I dont notice a problem. Enterolab showed no IgA reaction to caesin. No bloating.. But, I am wondering if someway I am having a "brain" reaction to caesin. I'm trying to pay attention to when I feel this burning in my brain and sinuses.. and it could be associated with my smoothies.. even after taking the whey out.. which really makes the smoothie for me anyway.. so I guess no great loss there.. still :-(
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I go back and forth on this. My gut blew out at about 4.5 months on mepron and biaxin with doxy in and out of the mix.

CSA showed no beneficial bacteria. I lost weight rapidly.. 30 pounds very fast. Enterolab showed gluten IgA. Off gluten and abx.. weight loss stopped. Still big problems. Food not digesting, though CSA did not for some reason pick up the extent of that.. nor did it pick up the parasites that came out when I upped my garlic..

Started GAPS diet and worked up as they suggest. Started with bone broths and boiled meat, soft cooked veges and lots of ghee and some coconut oil. (former vegetarian not liking this) I craved teh ghee and coconut oil. They are very healing to the gut. I am not sure if it was GAPS or time.. but last GI panel showed a huge increase in beneficial bacteria. Sig A up.. but lots of gut bacteria.

I have been off GAPS for a while (still gluten free).. you do work up to everything but grains and many beans because of the starch.(which makes me want to cry.. I can actualy deal without the grains except corn tortilla every now and then) No sugar, no lactose.. 24 hour yogurt eventually.

Which brings me back to the possibility that I might need to go back to GAPS.. just not appealing at all. But I have not purposely addressed these specific bacteria.. the Metametrix Panel seems to pick up pathogens that the CSA does not.

The theory behind the elimination of grains I think.. at last according to the GAPS diet and the Specific Carb Diet is the amylose.. add in lactose and sugars except in fruit form and honey. They feed the bacteria in the gut.

Honey and fructose in fruit form supposedly digest very quickly, thus do tno feed the bacteria.

I dont drink milk.. eat yogurt and milk in recipes. I dont notice a problem. Enterolab showed no IgA reaction to caesin. No bloating.. But, I am wondering if someway I am having a "brain" reaction to caesin. I'm trying to pay attention to when I feel this burning in my brain and sinuses.. and it could be associated with my smoothies.. even after taking the whey out.. which really makes the smoothie for me anyway.. so I guess no great loss there.. still :-(

Hi R**,

Why not take the things that can actually heal your gut? As a former vegetarian you likely are terribly deficient in b12 which causes your gut malfunctions and inflammation in the first place.
 

R**

Senior Member
Messages
121
I wouldnt doubt that even though serum has always been high. I'm on the yasko protocol and upping B12 (adenyl, hydroxy at this point) as well as B12 support. I want to see the protocol out for 6 months then I will reevaluate. I am sticking with her on not using methyl because of my COMT++,++ status. We shall see... I am gaining energy back. Dont know if this is temporary or what. Taking her gut support supps as well. I'm not sure about the fiber issue.. I do feel pretty sure the GAPS diet did help my gut heal.. as well as possibly VSL#3.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I wouldnt doubt that even though serum has always been high. I'm on the yasko protocol and upping B12 (adenyl, hydroxy at this point) as well as B12 support. I want to see the protocol out for 6 months then I will reevaluate. I am sticking with her on not using methyl because of my COMT++,++ status. We shall see... I am gaining energy back. Dont know if this is temporary or what. Taking her gut support supps as well. I'm not sure about the fiber issue.. I do feel pretty sure the GAPS diet did help my gut heal.. as well as possibly VSL#3.


Hi R**,

As you know, hydroxycobalamin is inactive until converted by the body to the only 2 active forms including methylb12. It works to a very limited extent, limited as to what can fit through that keyhole of conversion, which is very little. For me, as it does not supply an abundence of unbound active b12 to the tissues, neurological deterioration starts up within a few days, the same as if I were taking no methylb12 at all or one of the ineffective brands. It is methylb12 that is required for DNA replication that heals the epithelial tissues in the gut. It took about 6 months for my gut to heal 95% of the way with methylb12 in abundance. It's only recently that I have become aquainted with all the fear attached to the methylb12 over all sorts of things. All I can say in watching a lot of people use an agressive methylb12 and adenosylb12 protocol is that I have seen a lot of people heal and not a single genuine bad reaction though I have seen some people become concerned because changes indicating healing started occurring so rapidly. As 20-40% of people don't respond to hydroxcobalamin at all, nada, zero, I would think it would make more sense to take a limited amount of methylb12 so that you were sure of getting it, even if deliberately limiting it to minimal amounts.

One other factor comes to mind. I have known many who switched from hydroxycobalamin to an effective brand of methylb12. I know of not a single one that has ever switched back because they thiough the hydroxycobalamin was superior for them.

The effective brands of methylb12 can be incredibly quick. I was vomitting daily for some years and took compazine suppositories in order to be able to eat many times. I took my last suppository less than a week after starting methylb12 and never got another prescription for it in 6 years. I ended throwing out a couple of dozen suppositories when the expired. I was amazed at how rapidly it helped.


Good luck.
 

JanisB

Senior Member
Messages
247
Location
Central Ohio
Hi folks,
Several years ago I went gluten free and noticed a rapid change for the better in mental clarity. A nice improvement.
I tested negative for coelic but continued to eat this way as I feel better on it and have now recently discovered I have fructose malabsorpton.

Same with dairy, I can handle a little milk but not much cheese. For some reason (different proteins my dietitian says) I handle small amounts of goats cheese better.

I just wanted to bring to people's attention the interesting research of Dr. Kenneth Fine www.enterolab.com on non-celiac gluten sensitivity. It seems that about 1/3 of the population have genetic alleles on the lymphocytes (e.g. white blood cells) that present the peptides of gluten to T cells to be dealt with as if gluten was a viral or bacterial protein. The gut based immune system then makes antibodies to gluten. Dr. Fine believes these antibodies can wreak havoc in the body, and has found that a very high percentage of people with autoimmune disease have one of the alleles to make antibodies to gluten.

There is also quite a bit of research correlating gluten intake to mental and nervous problems -- see the list in the book Dangerous Grains.

People with gluten sensitivity usually cannot handle dairy, esp. cow dairy until the gut fully heals. Goat milk is a much smaller molecule and easier to absorb.

Probably reasons explaining Tony's experience.

Janis
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Freddd,

I agree with you.

R** should take the foods that heal.

(But if R** hasn't already done so, he should get a faeces exam done, you'd be amazed, as I was, that I had a long term parasitic infection - Blastocystis Hominus (can't remember how to spell it).

Antibiotics - 2 types taken at once had no effect.

What finally cured me was drinking the white pasty concoction I had to take for 24 hours before my colonoscopy & gastroscopy. Not only did it eradicate the parasite, it seemed to finally end the 2 1/2 years of chronic diarrhea.

I thought this type of parasite came from picking up tummy bugs in some foreign countries, but my Dr assured me that many people have these parasites & have no symtoms. He also mentioned that many people who live in crowded quarters eg army barracks, seem to catch these bugs more easily.

But my best piece of advice would be trial & error in your diet. Instead of spending alot of time looking at specific food groups, eliminate what obviously doesn't work for you and eat what does work well.

One might find that it's not a whole food group that you need to avoid. Or all carbs, or all grains or all fructose. I can eat some plain continental style yogurt & yet have alot of trouble with the rest of the dairy foods. I can eat one slice of plain cheese, but any more & I lose my voice & occasionally have trouble swallowing.

I can eat plain, dry biscuits, but sliced white supermarket bread brings me to my knees. After not eating white bread for many years, I had some mixed sandwiches at a work function recently & survived pretty well. Normally white bread makes me lethargic & at worst, I fall asleep within about 20-30 minutes. I am so lethargic that I cannot walk properly - I stagger like a drunk & can even fall asleep standing up. It takes approximately 4 hours for the effect to wear off. And that doesn't take into account the severe stomach bloating & other effects. But this sandwich luncheon (which I had to eat as the ladies in the office who made them would have been offended) had minimal impact.

Victoria
 

R**

Senior Member
Messages
121
Gluten-Enterolab

Thank you, Janis. My kids and I have had the IgA test for gluten.. positive, but the test that looks into autoimmunity.
 
Messages
22
probiotics

hi I am new, I have read the fiber gut h2s probiotic article and am having a NIGHTMARE trying to find any probiotics without the PREbiotics which can cause issues according to the article and also I cannot seem to find any PRObiotics that dont have the D-lactate causing strains, I live in UK so I cannot buy ALIGN and it cannot be sent to UK, I even contacted the supplier direct,
any ideas?
cheers Jimm
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
On the issue of long term healing of the gut, I had to avoid the things that caused inflamation totally for a while. After my gut started healing I was able to discern the effect of milk products. Before it started healing this was not discernable. After healing started I could tell the difference. It took about 6 months totally without milk products for healing to complete. Now, if I take lactase, I can have milk or icecream or cheese once a week or so without problems. If I have it several days in a row, problems start up again despite the lactase. Nothing else appears to make a difference for me. There is a cumulative effect. Something that is ok once a week or month doesn't work on a daily basis. I don't know how this applies to others except that we have to let healing occur before we know what our limits are.
 

beaverfury

beaverfury
Messages
503
Location
West Australia
Can anyone reccomend the definitive 'gut site' on the web so i can fastrack my education?

This Crohns disease site clearly separates SIBO and other dysbiosis causes. http://www.crohns.net/Miva/education/dysbiosis.shtml

'For putrefaction dysbiosis a diet high in both soluble and insoluble fiber and low in saturated fat and animal protein is recommended.
These dietary changes help to lower the concentrations of Bacteroides and also increase concentrations of lactic acid-producing bacteria like Bifidobacteria, Lactobacillus and beneficial lactic acid streptococcus in the colon.

For fermentation dysbiosis, on the other hand, starch and soluble fiber can exacerbate the abnormal gut ecology. When the small intestine is involved, simple sugars are also not advisable. A diet free of cereal grains and added sugar is recommended.
Fruit, fat and starchy vegetables are tolerated to variable degree for each individual. Oligosaccharides found in some vegetables, carrots in particular, inhibit the binding of enterobacteria to the intestinal mucosa. '

I notice only one person from 22 in the survey had a problem with meat. Is our problem predominantly SIBO?
In which case... we should be staying away from fibre?? Confusement.
 

Enid

Senior Member
Messages
3,309
Location
UK
I think with a thoroughly comprised gut it's what goes down with not too many difficulties or reactions the best.